Calling all special needs parents

I am compiling a list of special needs, agencies and resources. I would be SO grateful to you guys if you would take a minute and send me any or all of the following:

1) your child’s SN (and if they are home, approximately when they came home)2) your agency and contact info if necessary3) any resources that you found particularly helpful when researching your child’s SN

Feel free to leave a comment or email me privately at chrisnstefanie@gmail.com.Did I mention how stinkin’ grateful I would be if you helped out? Because I really would be, really.

Mia An QiHome: 12/06SN: VSD & ASD (Known VSD; ASD found once we returned home)Agency: FTIAhttp://www.ftia.orgResources: I found the International Adoption Clinic at our local children's hospital to be the best resource.

Resources: A very good pediatrician who took the time before we came home to explain the issue and the possible outcomes. A renowned pediatric cardiology clinic that even had a Chinese sonogram tech to help calm L when she had her first check-up at 1 week home.

Not to many useful sites,,, I did find a few other parents and spoke with them. not a very common SN..I have been researching different SN and have been wondering about the ones that are not as common. I have been looking at the most current Shared lists and looking up all the ones that I have never heard of……

Claire Hope KangtongHome:5/08SN:Repaired Myelomeningocele (spina bifida) and unrepaired right club foot and left vertical talus (opposite of club foot).Agency: Children’s Hope InternationalHelpful Resources: Yahoo group-nosurgery4clubfoot. Dr. Dobbs at Shrinners, St. Louis, for the vertical talus- he’s an expert at this defect. Most doctors thought it was also a club foot so most children will not be diagnosed with vertical talus. Spina Bifida Association of America, ssba.org.

Flynn QiuQiuHome 08/06/08SN unrepaired cl/cpAgency: CCAI ColoradoHelpful sites: Yahoo adoptcleft board, LWB’s cleft clinic blog, cleftline.org.Note: The single most outstanding bit of useful information about the condition, which is surprisingly NOT easy to discover, is that the vast majority of children with a cleft condition will need multiple surgeries in the course of their early lives…and I mean more than a dozen, including major and minor procedures. Speech therapy is also a big part of the equation. I’m not sure why most people don’t know this. It does not (at least to our minds) make the condition any more frightening – but it’s an important thing to know and be prepared for, both financially and emotionally. The child will get used to it, as will the parents. But it strange that you will not hear this basic fact, even from most medical professionals. It’s very important to go to a cleft clinic at a local children’s hospital BEFORE adopting your child, so that you really have a clear understanding of the various medical procedures involved. We found that the most difficult thing was to convince our families that there would in fact be many, many surgeries over the years, and that this was normal and manageable. To some people, this sounds shocking – like a “life sentence”. But it isn’t. It quickly just becomes a normal part of life, like taxes and chores. It is, however, par for the course, and people should know that.

My most helpful thing was to speak to real people who dealt with these things personally. I like to hear from Docs, but feel like another parent can tell me what it will REALLY be like!Btw-we researched tons of SN, and hands down, it was the personal stories that helped me.

Glad to share…Emily Wan YeHome 8/8/08SN: Bilateral Absent of ThumbsShort Radius BonesMinor heart defect found once home will correct in cath lab.Agency:Lifeline did homestudyMadison Adoption Associates I found other parents an our international adoption clinic to be the most helpful

We go to the Craniofacial Team at Children’s Hospital of Orange County (CHOC). We will meet with them once a year and they will monitor Christian’s progress, letting us know what will need to be done when.

He’s already had surgeries to insert ear tubes and he’s had his palate repaired. Both surgeries were done at CHOC. They are great.

Most helpful resource:Childrens Hospital, Seattle Dr.Hanel–orthopedics And Ultimately our adult friend who only has a thumb on one hand. We really don’t even see it as a SN because of knowing our friend!

Drew FuPengHome- December 2008 or early January 2009 (waiting on TA)Agency- CCAI (chinesechildren.org)SN- microtia & atresia of the left earHelpful Sites- CCAIWCP yahoo group; Microtia/atresia yahoo group; blog of another family SeekingOurSilas.blogspot.com to see how normal this can be to live with!; speaking with local audiologist at FSU regarding condition and treatments/options.

There were many other sites that I used on a regular basis, but these were some that I found especially useful. I used Chinaadopttalk.com primarily to connect with other parents of children adopted from China, including those with special needs.

Oh — and then there were things like this that helped me through my journey with secondary infertility, my decision to adopt, and my wait for my daughter:

As blessed parents of three, we believe that all kids have special needs to one degree or another. The difference with kids adopted from Waiting Child lists is that you have a little more advanced notice about the most obvious challenges your child will face. With that in mind, here’s our “SN” child: